Caring from Far Away

“People see my sister doing the daily work and assume she’s the real caregiver. They don’t see the three phone calls a day, the insurance research, the financial management, the middle-of-the-night worry. Distance doesn’t mean absence. It just looks different.” — David, 49 Approximately fifteen million Americans provide care for a family member who lives at least an hour away. Long-distance caregiving carries its own specific anxieties: the inability to see what is actually happening, the dependence on secondhand reports and telephone assessments, the visits that try to compress months of tasks and connection into a few days, and the guilt that does not resolve because the distance does not resolve. Long-distance caregivers also carry an invisibility that is painful and unfair. The sibling who lives nearby and handles the daily tasks is visibly doing something. The sibling three states away who manages the finances, researches facilities, coordinates benefits, handles insurance appeals, and lies awake at two in the morning calculating what the fall she just heard about might mean — is often not seen at all. This invisibility breeds resentment in both directions: the nearby sibling feels unsupported, the distant sibling feels unrecognized. Both are right. Both are wrong. This is why the explicit conversation about contribution matters so much, addressed in Chapter Fourteen. Building a Local Network For families who cannot be physically present most of the time, the single most transformative resource is a geriatric care manager, also called an aging life care professional. A geriatric care manager is typically a nurse or social worker who: • Conducts a comprehensive assessment of your parent’s needs and living situation • Develops and coordinates a care plan, working with healthcare providers and home care agencies • Accompanies your parent to medical appointments and reports back to the family • Serves as the local professional contact for emergencies and unexpected developments • Becomes the family’s eyes and ears on the ground, providing an objective professional perspective that family members, even nearby ones, cannot always provide For long-distance families, a geriatric care manager is often worth every dollar. Find one at aginglifecare.org. Beyond a professional, every long-distance caregiver who reports feeling relatively well-supported has, when pressed, identified at least one local person — a neighbor, a longtime family friend, someone from the parent’s faith community — who serves as an informal local set of eyes and ears. This relationship, cultivated proactively rather than discovered in a crisis, is genuinely valuable. Call this person. Explain the situation. Give them your cell number. Ask them to contact you if something seems off. Most people, when asked explicitly to help in this concrete and limited way, will say yes. Making Visits Count Long-distance visits work significantly better when they are planned in advance rather than improvised upon arrival. Before traveling, identify the two or three most important things to accomplish — medical appointments to attend, legal matters to address, specific conversations to have, home modifications to complete — and schedule these before you arrive. Trying to accomplish everything on the fly is exhausting, incomplete, and stressful for everyone. During the visit, observe carefully and systematically. Look at the house: is it clean and organized, or is there evidence of neglect? What is in the refrigerator, and when was it purchased? Is there unopened mail, unpaid bills, evidence of financial confusion? How does your parent move? What are their energy levels, their mood, their engagement in conversation? Talk to the people who see them regularly — neighbors, the pharmacist, the home health aide, anyone who has regular contact. These people often know things that do not surface in phone calls and that your parent may not be sharing with you. And reserve some portion of every visit for time that is purely relational and not task-oriented. Not logistics, not difficult conversations, not the execution of the list. Time that is just being together, the way you used to be before any of this. This time matters — for your parent and for you. The relationship is not only the vehicle for getting the practical work done. It is the point. The Standing Connection Call A regular, scheduled call — same day, same time, every week — does more than any individual call can do. It creates a baseline. When you talk to your parent at the same time every Sunday, you hear changes against a background of ordinary. You notice when the voice is different from last week, when the stories are more confused or more repetitive, when the energy is lower, when something that is usually there is missing. This baseline information — developed over weeks and months of consistent contact — is often more diagnostically useful than any single crisis call. Susan, 51 — what the Sunday call actually does I have a standing Sunday afternoon call with both my parents together. It started as practical information-gathering, honestly. I needed to know what was happening. It became, over time, the thing I look forward to most every week. I hear things in those calls I would never hear in a crisis call — what they watched on television, how my mother’s garden is doing, the ordinary texture of their life. When something does change, I notice it against that background of ordinary. That’s actually the most useful thing the calls do. They give me the baseline that lets me see change. PART FIVE The People Around the Person The well spouse, the children, the whole family The Emotional Weight of Distance Long-distance caregiving carries a specific kind of guilt that is different from the guilt of the nearby caregiver. It is the guilt of not being there. Of the middle-of-the-night phone calls where you can hear that something is wrong and you are five hundred miles away and there is nothing you can do in the next three hours except worry. Of the visits where you arrive and see that things have changed since your last visit and you do not know when that change happened because you were not there to see it happen. This guilt is real, but it is also, in part, unfair to yourself. Long-distance caregiving is real caregiving. The financial management you handle from your home office, the insurance appeals you make, the benefit programs you research and apply for, the weekly calls you make to keep your parent connected, the coordination work that happens by phone and email — this is work. It is invisible work, in the sense that no one else can see it directly, but it is not less real for being invisible. What long-distance caregivers most need to hear, and most rarely do: you are contributing, even when you are not physically present. Your contribution looks different than the nearby caregiver’s contribution. It is not lesser. It is different. The problem in most families is not that the long-distance caregiver is doing nothing. It is that no one has been explicit about what each person is actually doing, which allows both sides to feel unseen and resentful. Technology for Staying Connected Video calling has been transformative for long-distance family relationships in ways that phone calls alone cannot replicate. Seeing your parent — their face, their posture, their expression — provides information that voice alone cannot. A parent who says they are fine but sits hunched and avoids eye contact is communicating something that their voice will not capture. A parent who seems energized and engaged, who shows you what they’re working on in the garden, who laughs at something on television, gives you a much richer picture of how they actually are. For parents who are not technically comfortable with video calling, simplicity matters enormously. An iPad propped on a stand, set up so that the parent only needs to press one large button to connect, removes most of the friction. Amazon’s Echo Show devices — smart displays with screens — can be set up to receive video calls with voice commands only. The technology exists to make video calling accessible to almost anyone; the barrier is usually initial setup, which requires a one-time in-person investment that pays dividends for years. Consider a dedicated family communication channel — a group text, a private Facebook group, a shared album, or a platform like CaringBridge — where caregiving updates, photos, and observations can be shared without requiring individual updates to each family member. This both reduces the burden on the primary caregiver and ensures that everyone is working from the same current picture. Planning for Emergencies From a Distance Long-distance caregivers have particular reason to think through emergency scenarios in advance, because their response time is unavoidably limited. Some specific preparations: Create a local emergency protocol: who gets called, in what order, if something happens? This list should include family members, neighbors, the geriatric care manager if one is in place, and the primary care physician’s after-hours line. Make sure everyone on the list knows they are on it. Keep a packed overnight bag or the equivalent — passport, medications, phone charger, essentials — that can be grabbed quickly if you need to travel on short notice. This sounds like preparation for a crisis that may never come. It is. But the caregiver who has never thought about how they would get from their home to their parent’s home on eight hours’ notice is the caregiver who arrives four hours later than necessary because they were trying to find their passport while also calling the airline while also in shock. Identify an emergency fund specifically for unplanned travel. The combination of a last-minute flight, a rental car, and a hotel can cost significantly more than planned travel. Having money earmarked for this purpose removes one source of stress from an already stressful situation. Making the Most of Visits: A Practical Guide Long-distance visits work most effectively when they are structured in advance. The temptation is to arrive with good intentions and figure it out when you get there. The result is usually that the visit is spent on whatever is most urgent rather than what is most important, with the important things perpetually deferred to the next visit. Before each visit, identify three to five specific priorities. Not a comprehensive to-do list — three to five things that will genuinely matter if they are accomplished. Medical appointments that need to be attended. A difficult conversation that needs to happen. Legal or financial documents that need to be reviewed or signed. Home safety modifications that need to be made. Then schedule those things before you arrive, so they have dedicated time rather than competing with everything else that will inevitably come up. Also plan specifically for relationship time. Not task time, not information-gathering time. Time that is simply being there, the way you used to be before any of this. A meal with no agenda. A walk, if that is still possible. Looking at photographs. Watching something on television together. This time serves your parent and it serves you. The relationship is not just the vehicle through which you accomplish the caregiving. It is the point. Finally: talk to the people who see your parent regularly — a neighbor, the pharmacist, the person at the senior center your parent goes to on Thursdays. These people have information that does not appear in any call or chart. They know things you do not know. A ten-minute conversation with your parent’s pharmacist may tell you more about how things are actually going than three months of weekly phone calls.